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Stunned. Ambushed. Traumatized.
These were the words that Jeffrey, 76, used to describe how he felt when he stumbled upon his therapist’s notes after logging into an online patient portal in June.
There was a summary of the physical and emotional abuse he endured during childhood. Characterizations of his most intimate relationships. And an assessment of his insight (fair) and his judgment (poor). Each was written by his new psychologist, whom he had seen four times.
“I felt as though someone had tied me up in a chair and was slapping me, and I was defenseless,” said Jeffrey, whose psychologist had diagnosed him with complex post-traumatic stress disorder.
Jeffrey, who lives in New York City and asked to be identified by his middle name to protect his privacy, was startled not only by the details that had been included in the visit summaries, but also by some inaccuracies.
And because his therapist practiced at a large hospital, he worried that his other doctors who used the same online records system would read the notes.
In the past, if patients wanted to see what their therapists had written about them, they had to formally request their records. But after a change in federal law, it has become increasingly common for patients in health care systems across the country to view their notes online — it can be as easy as logging into patient portals like MyChart.
While transparency can be a good thing, some patients and health care experts are asking: Can too much transparency cause harm to mental health patients? And many providers are grappling with how to write progress notes when they are so easily accessible.
“It is an ethical dilemma,” said Charlotte Blease, a digital health researcher at Uppsala University in Sweden who has studied mental health notes in the United States, the United Kingdom and Europe. “I don’t think that there are any easy answers.”
Health Records, at Your Fingertips
The Department of Veterans Affairs was one of the first organizations to put mental health notes online in 2013. The next year, Beth Israel Deaconess Medical Center in Boston piloted the practice of sharing psychiatry notes before eventually sharing notes with all of their mental health patients.
Starting in 2021, the federal government required all U.S. health care systems to share clinicians’ visit notes electronically, often referred to as open notes, as part of the 21st Century Cures Act. This includes therapy progress notes, which typically provide information about the client’s appearance and mood, a diagnosis, the treatment plan and any progress the client has made toward therapy goals.
As a result, mental health visit notes are easily accessible via online portals from many health care institutions. But there are still networks that choose not to make the notes so easy to find.
Research on the effects of reading open notes among those with severe mental illness is limited, but some studies suggest that reading progress notes can be beneficial. One of Dr. Blease’s studies, for example, found that among participants with severe mental illness, 20 percent said that reading their clinicians’ notes made them more likely to take their medications.
A 2022 study of 178 veterans who were receiving mental health treatment at a large Veterans Affairs medical center found that reading therapy notes helped nearly half of the participants feel in control of their health care and have more trust in clinicians. Even so, 8 percent said they frequently felt upset afterward.
“There’s an opportunity for better care in this,” said Dr. Ken Duckworth, the chief medical officer of the National Alliance on Mental Illness. “I also think there’s an opportunity for rupture of relationships.”
The Limits of Transparency
In 2021, Lisa, who is 64 and lives in St. Paul, Minn., visited a therapist to cope with the death of her husband. Like Jeffrey in New York City, she has been diagnosed with P.T.S.D. and did not wish to share her full name to protect her privacy.
She was walking her dog one day when she came across her progress notes after logging into the patient portal on her phone to search for the time of her next appointment.
What the hell is this? she remembered thinking.
“I thought these things that you say in therapy were confidential,” she said, adding that “it felt like a real betrayal.”
She also saw two goals listed for her by her therapist: Stop crying so often and be more productive at work. And she was shocked to see a detailed description of her most private thoughts.
She asked her therapist to take down the notes but he declined, so Lisa canceled her next appointment and found another therapist in private practice who ended up being a better fit.
Even now, a few years later, Lisa said she was still disappointed.
At Beth Israel, however, the notes have been mostly well received, according to two clinicians there.
“Some people thought it would cause an uproar — that patients would be offended or clinicians would find it burdensome or patients would complain,” said Dr. John Torous, a psychiatrist there. “But in that sense, a lot of nothing happened.”
Unlike Lisa or Jeffrey, the patients at Beth Israel knew the notes were being posted online. The doctors openly discussed them and provided guides explaining how open notes worked and what to do if a patient found a mistake.
When asked if he had changed the way he wrote his notes, knowing that patients might see them, Dr. Torous said he now wrote them in a more conversational tone, but overall they were roughly the same: brief and to the point.
Other clinicians have said that they write less detailed notes and also changed the tone of their writing.
The 21st Century Cures Act allows clinicians to block notes in certain circumstances — for example if there’s a chance that the patient could become suicidal or homicidal after reading it.
Steve O’Neill, a licensed clinical social worker and the director of behavioral health for OpenNotes, the organization at Beth Israel that has pushed for transparency between clinicians and patients, said that he temporarily blocked his notes from a patient who initially became psychotic and holed up in her apartment after reading them.
There needs to be more research, Dr. Blease said, examining whether patients with severe mental illness could experience emotional harm or even self-injury after reading open notes.
Dr. O’Neill has observed that some patients benefit from reading the notes alongside a clinician or in group therapy.
It’s important that the patient not feel “ambushed,” he added.
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